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Research Gives People Hope: Multiple family illnesses inspire a couple's life-long commitment to the mental health cause

February 01, 2011

The Garatt Family

From The Quarterly, Winter 2011

No one knows better than the Garatt family how far research in mental illness has come – and how far it still has to go. Thirty-three years ago, when Sean Garatt was diagnosed with schizophrenia, his mother, Marcia, was told that she was the cause. The “bad mothering” theory eventually collapsed under an avalanche of research pointing to schizophrenia as a biological illness, opening the door for more treatment options.

Sean was 17 years old at the time of his first psychotic break. He remained seriously ill, his life a shambles, until the age of 31, when he was given Clozapine, an antipsychotic drug developed in the late 1980s under the leadership of the Brain & Behavior Research Foundation Scientific Council Member Herbert Meltzer, M.D. With medication Sean got better; not totally well, but mostly free of mind-imprisoning psychosis and able to live an ordered, if limited, life. “Now, he knows what day it is,” Marcia says.

Even before Sean’s diagnosis, the Garatts were no strangers to mental illness. Paul, Marcia’s husband of 53 years, has been battling anxiety and depression most of his life, including a close brush with suicide. The family’s experience has made them outspoken advocates for better understanding of mental illness and ardent supporters of the Brain & Behavior Research Foundation.

Young couple faces mental illness together
Absent mental illness, the Marcia and Paul story would have read like the quintessential American dream: idyllic rural childhood, committed marriage, good jobs, two wonderful, devoted sons. The couple grew up in the small farming community of Candor, in upstate New York, dated in high school and married after finishing college. That is, Marcia finished college. Paul dropped out. Although bright and articulate, with a wide range of interests and abilities, Paul’s “noisy brain,” as he calls it, made it impossible for him to focus on his studies. “I married him anyway,” Marcia says. “We were so young and innocent, and he was so enjoyable and funny.”

Without work or prospects, Paul joined the Navy and thoroughly enjoyed seeing the world while chasing Russian submarines. On entry, he had tested so well that he had his choice of specialty. He chose electronics, and military structure and discipline kept him on task. After his four-year tour of duty, Paul’s training served him well when he returned to civilian life.

Marcia, who had majored in social work, became a probation officer, working with child offenders the courts were trying to keep out of prison; children that others in the system were convinced couldn’t be helped. Marcia saw it as “a wonderful challenge.” She set up a volunteer program that over the years provided many such youngsters the chance to do things they’d never done before: farm, swim, fish. Her 18 years of service earned her an award from the state of New York and the satisfaction of knowing she had helped turn around some very troubled young lives.

Despite these triumphs, mental illness always hovered over the Garatts’ lives. When Paul’s early jobs in computer testing and quality control became boringly routine, he taught himself computer programming. In a burgeoning industry, he soon landed a very good, more demanding job in North Carolina. As it turned out, it was too demanding. He went to bed at night worrying about work and woke up to the same worries.

“I just could not, as the saying goes, lock my toolbox,” he remembers. “I had taken a job I couldn’t do, I hadn’t enough training for. The pain went on and on and I couldn’t unhook my brain. So one day I stopped my car on the railroad tracks. I knew the train would be coming soon, and then it would be over. But what happened instead, other cars pulled up, and when the guy behind me honked, I drove on.” He drove home, and when he told Marcia what had happened, she said, “We’re going to the hospital.”

They went to Duke University Medical Center, where Paul received state-of-the art treatment that included both medication and cognitive behavioral therapy. When back on his feet but concerned about his future, a therapist encouraged him to go back to his boss and ask for a less demanding job. To Paul’s surprise, the boss agreed. Later, when the company was downsizing, they made him the proverbial offer he couldn’t refuse, and he took early retirement.

From denial to action
Paul is ever conscious of and grateful for Marcia’s steadfastness through many trying years. Marcia acknowledges that she has often felt pushed to the edge of despair. Both admit they were, for a long time, “in denial” about their son Sean.

Scientists are now pretty certain that genetic pre-disposition combined with some environmental factor – possibly maternal infection or trauma during pregnancy – triggers schizophrenia in many instances. Despite its early seeding, however, full-blown symptoms typically don’t erupt until adolescence or early adulthood. There can be a gray period before then – what’s called the prodrome – when the child’s behavior begins to become worrisome. But when dealing with a rebellious adolescent, how is a parent to know, except in hindsight, whether, as Marcia says, “you have a bad child or a mad child?”

By the age of 14, the once cheerful, responsible Sean had grown angry and argumentative, hiding away in his room. The Garatts could later recall some startling earlier clues to his – and their – impending reality. They remember a day when 12-year-old Sean, browsing in the Encyclopedia Britannica, looked up and said, point blank, “I have schizophrenia.” More painfully unforgettable, at the age of five he told them that he felt “like I have a tangled Slinky toy in my head.”

Sean’s years in the wilderness, until he was finally stabilized, were marked by earnest if futile efforts to live a normal life: failed attempts to hold a job, an ill advised and short-lived marriage, a baby son neither he nor his violent, addicted wife could handle. (The child was subsequently raised by his maternal grandmother.)

Seven years ago, Marcia and Paul moved to Paducah, Kentucky, to be near their younger son, Geordie, an attorney, and his family. Sean moved with them, but lives on his own. Each morning he calls his parents to reassure them he has taken his meds. He takes halperidol (Haldol), an older, so-called typical antipsychotic, in combination with Clozapine. Among the things clinicians and researchers have learned is the importance of tailoring medications to the individual patient. One size does not fit all. Once, when a new doctor took Sean off halperidol, he crashed.

Atypical antipsychotics like Clozapine can have some serious side effects. A common side effect is metabolic syndrome, marked by weight gain, high blood pressure and the risk of diabetes and cardiovascular illness. Because Sean has put on weight, every day he and Marcia go to a fitness center. He also attends diabetes prevention classes. Looking toward the time when they will no longer be there for Sean, Marcia and Paul update a plan every year, a list for Geordie of his older brother’s needs.

In addition to helping the Brain & Behavior Research Foundation, the Garatts have been active for many years with NAMI, the National Alliance on Mental Illness, a grassroots, self-help, support and advocacy organization. Paul and Marcia both taught a course for caregivers of people with severe mental illness in NAMI’s family-to-family program. They were instrumental in establishing NAMI in North Carolina, and Paul served as its second president. Currently, Marcia and Sean have been working with their local NAMI, teaching people how to set up a crisis plan: the steps to take when a family member with mental illness encounters difficulties.

While teaching for NAMI, the Garatts often clipped items of interest from Brain & Behavior Research Foundation publications to distribute to the class. “We’re most appreciative of NARSAD Grants,” Marcia says. “When I read what their scientists are doing, I’m just amazed. As I try to keep up with things that are going on in research, I get the feeling that this Foundation is way ahead of the curve.” Says Paul: “Research gives people hope.”

Article comments

This sounds a lot like my family but our daughter refuses any medication or Dr. She lives alone in a house we bought for her but can't keep it up and she lives on SSI. Refuses food stamps so is often hungry. Neighbors are cruel to her and her strange ways. She is now 60 and we are 86 and worry about her future. We have her in our estate plan and her brother as executor. She needs companionship. We live 400 miles apart and her grown son lives with us. We enjoy your magazine and articles. Thanks so much!

I'm szx, I never ever thought I would be, I hadn't even hardly heard ot it(sheltered) Am on meds and wonder how anybody functions off meds, it's so effing noisy, like sleeping in Times Square. People adapt, but they adapt to meds too. And God has only helped those who help themselves. You really don't want people taking meds forced for the rest of their lives, you really don't. So what's the solution, involvement, expose them to recovery stories, stories of hope and such, and get people to realize Life ain't easy, but there is hope. As soon as they realize life can be a lot better or even marginally more interesting, they'll take that carrot and bite off the string. So involve people in their recovery, don't just cop out and should on them, it's messy.

Thank you for sharing your story. My son is 23yrs old and recently got evicted out of a good group home he had been living in for 1 1/2 yrs. He thinks the "others" are to weird. He has not come to terms that he has this disorder even though he does take his meds pretty regular. So now he's sleeping on a friends couch. He cannot live w/me and his 10 yr old sis because of his behavior towards me which can be pretty scary. I love my son and it makes me sick to think he's so lost. Just recently his case manager said she wants to help him find a place to live however he does not want to live with any "crazies" as he puts it. I don't want him on the streets but I don't know what to do. Any advice from any one would be appreciated. Thank you.

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My son has a diagnosis of schizophrenia. He had some symptoms when he was in school. The symptoms like hearing voices became worse when he was in college. He managed to college with small doses of antipsychotics. His symptoms continued. When started on Geodon he developed pseudo seizures and severe anxiety. His medication is changed clozapine. Now he is on clozapine and an antidepressant , Effecsor. He is much better and doing part time job. I thank NARSAD for sharing stories.

My daughter 46 has schizophrenia and bi polar. she is totally out of control will not take her meds smokes 3 packs of cigarettes
a day. I have tried to get her in a hospital to get her back on her meds but after I sign court papers to get her in she acts normal and the drs will not put her in. I have just given up she needs help but I cannot deal with it any longer. I have PD my husband is diabetic and all the stress she causes us has made us both get worse with our health. I try to make sure she eats. she has her own house which she cant keep up with. I pay her bills and she signs the checks. she is constantly accusing us of taking her money. everyone knows her and sees her mental decline and Im sure they wonder why we dont do something. The truth is we have tried the mental health system has failed her. we are hopeless. I dont know what will happen to her when we die.

While living with these challenges can be very worriesome and tiring and may even add to additional health difficulties, please know our loved ones need love and support. We need to learn to balance meeting their needs with also meeting our own needs. We need support, too, while we continue to assist our loved ones.

We can best get the help in research funding only by sharing openly. We need to educate the public-- our friends/families/neighbors/doctors and other medical professionals/priests, ministers/ legislators on state and federal levels/ social welfare agencies, teachers, employee assistance programs... and so many, many more.

We need to share and to educate as much as possible. We also need to ask for, to demand, and to expect appropriate levels of funding monies going directly into research. We need to expect the best care for our loved ones.

PLEASE keep sharing openly, keep telling it like it is -- for you, for your loved ones.

We need society to respond in a hugely positive manner. In order to achieve this, we need to share as candidly as possible, not buying into any degree of shame. We are all human beings. We all deserve understanding and the helping hands of other human beings. Society will respond more and more, with increasing compassion and with expectations of increased funding and expectation of better care, as well, once made more fully aware of the truths, the heartbreak, the hardships, the pain... and also made aware of the hope we all have in research, in appropriate care, in adequate social support systems, etc.

Nobody is immune from these challenges. Nobody.
We are all in this together!

Stay strong! Keep the faith! Give yourselves credit for showing such love and for doing your own very best, even when unable to always find support and/or respite.

Please keep telling your stories. Please know many share these challenges and do care, do work for additional research funding, do advocate for great care, do advocate for adequate social support networks, and more.

Many join with you in strongly advocating for reaching many important goals.

May we all/each find some solace in knowing we have done our best to show love, concern and support toward your loved ones. May we understand and accept that our loved ones, too, are doing their very best.

May we continue to have the courage to share so candidly, in an effort to educate/advocate for the welfare of all of humanity.

May we find the strength to continue strong advocacy.

May we all find inner peace, comfort and joy in our lives.
May you feel Love surrounding you and your loved ones, always.

though reading the stories i know my issue is by far minimal and many people struggles worse then mine. I deal with GED , this worry and anxiety sometimes drives me crazy and the inability to control them... finding a medication that works well is hard to find. My main problem is fear of taking medications and actually taking a new medication can trigger a full on panic attack. At times i have to sit with my doctor when i take the first dose because of the fear of a heart attack. I know it sounds silly. I took me a long time going to the gym also because of the fear of heart attack.

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